Finding Katniss

Having a sibling who suffers from addiction is like having a little man inside you chiseling away at your soul.  You can’t understand why he picked up the chisel in the first place.  We weren’t raised this way.  We haven’t been abused or damaged or misdirected.  We’ve been taught proper morals and ethics.  Yet here he is, so tempted by the power of the chisel that it is irresistible, and in his mind it is nothing that will take him beyond control.  He feels he is above it, his cocky self-assurance overriding reason.  He is the exception.  Until one day, somehow it all slips through his fingers.  And the chisel is now the one in control.  But he won’t ever admit this.  At first, it isn’t so awful, and maybe even undetectable by the trusting heart.  But slowly, the sneaky chisel promotes lies, betrayal, disregard for loved ones.  The chisel stands tall, making its mark as the mighty leader.  And it leads to the point that everything and everyone of value is practically gone.  At some point, the weight of the chisel becomes too much to bear, so he puts it down and desperately tries to walk away.  Oh but in this act, somehow that chisel grows in power.  Tempting.  Taunting.  Begging for another chance.  And the urge is one he cannot resist.  He is forever tied to that chisel.  So he picks it up again, and digs deeper, further into darkness.  Despite efforts to delve into other areas of positivity, the repercussions of interacting with the chisel are too great, too significant for his cocky self-assurance to persist, and he gives in.  He is too deep, and he resolves there is only one way out.  Unconventional.  Misunderstood.  Heartbreaking.  He voluntarily ends the life led to him by the chisel.  You grapple with this.  Daily sadness hovers.  Outsiders presume there must be some relief to finally having an end to the burden of life with the chisel.  However, you know that peace is a far cry from what’s left behind.  After all, that little man with the chisel was inside you, slowly chipping away.  Emptiness now resides, allowing a gaping hole for pain, confusion, and sorrow.  How you hate that damn chisel.

Scanxiety – a feeling I never knew or understood until I was diagnosed with cancer.

I know I discussed scanxiety in a previous post, but I think even then I was hopeful that it was a feeling that would dissipate.  I’m slowly learning that it is yet another side effect of cancer.  It’s a feeling I struggle with, and then attempt to bury deep away.  That is until 6 months pass by, and suddenly it’s time for another mammogram.  It all resurfaces.

This week’s mammogram was my second one following treatment.  It’s amazing to me how a place that became so familiar to me, that I visited almost daily for an extended period of time, could create such anxiety in a follow up visit.  I felt complete dread with each step I took closer to the building.  I gave myself little pep talks the whole way into the door.  Yet I could not put myself at ease.  Please Lord, I can’t go through it all again.

Somehow, like all cancer survivors, I managed to muddle through it.  The new radiologist had nothing to say to me, other than simply, “Everything looks fine.”  I still have a hard time trusting this radiologist, as he was not involved in my care throughout the course of my diagnosis and treatment.  I’m sure he’s good at his job, but he doesn’t know me, and I don’t know him.  I just have to take his word for it.

And so the trend continues – most of the doctors who comprised my team of direct care are now gone.  Most of them moved on to different opportunities.  Except for one.  My surgeon – the doctor who changed everything for me.  I knew I was in great hands with her, and I loved having her as my guide through the process.  I recently learned that she passed away.  From cancer.  I can’t express how much of a hard hit this was to me.  It completely saddened me.  Angered me.  Scared me.  She saved me, yet not even a year later, she lost her own battle with cancer.  The irony is suffocating.

When I was under her care, I had absolutely no idea that she herself was facing the enemy.  I had a strictly professional relationship with my doctor, yet I have shed so many tears over her loss.  She was an accomplished woman who touched many lives during their greatest time of need.  I hope she knew how much of a difference she made.  She was a blessing bestowed upon me, and I am forever grateful for her.

I read in her obituary that she had an unending love for minions.  I have no idea how to honor a woman who played such a significant role in my life, but I’m hoping this would bring her a smile.

Thanks Doc, for being “one in a minion.”  You will be greatly missed.

Cancer:  the enemy.  You fight the battle and pray that is the last of it.

Yet cancer has this way of hovering, like that black cloud that continues to follow you wherever you go.  I’ve felt this black cloud every day since I was diagnosed, though the way I picture it is more like a Dementor from the Harry Potter series.  A few words I think to best describe a Dementor:  Dark.  Powerful.  Evil.

My black cloud has taken on this shape.  This is cancer, marking its territory.  Even though I’ve completed my treatment, the Dementor is still there.  Some days it’s simply lurking behind me, other days it taunts me, and then there are the days when it slaps me so hard in the face I feel all the wind has been completely knocked out of me.  Those are the days when sadness and fear rule the roost.  And it appears silly Katniss went out without her quiver.

Stories of people losing their lives to cancer, whether I knew them or not, cut right through me now.  I feel an actual constriction at my throat, and that damn Dementor sneaking in to chisel away a little piece of my spirit.  Why did they lose their battle?  Why did they have to go to battle in the first place?  Why, dammit, why?

And then there’s recurrence – every cancer survivor’s worst fear.  My heart honestly can’t take me doing research to see if there’s any validity behind this claim, but based on people I’ve met and stories I’ve heard, it seems as though cancer comes back with a vengeance.  It’s as if the first go around was just a small sampling of what’s to come.  Something bigger, something badder, is lingering in the distance.  In these moments, fear like I’ve never felt before takes residence.  That could be me.   And here comes the Dementor, threatening to cut off my air supply, leaving me practically frozen in my place.  The doctors can rattle off statistics that reveal better odds regarding recurrence, but they’re just not enough to keep the Dementor away.

I look at photos of myself from just a few years ago and all I can think is, “I miss that girl.”  I miss the girl who had no idea what it was like to have a Dementor creeping overhead.  I miss waking up and not thinking about cancer.  I miss the carefree steps I took each day and didn’t even realize it.  I miss going to the doctor only once or twice a year for merely a check-up, when an oncologist was someone I had only heard of other people having to visit.  I miss going to bed each night with just the daily stressors on my mind, versus the leaden weight I now bear on my shoulders.  I miss so much about that girl that I often find myself squeezing my eyes shut and wishing I could be her again.  I know I can’t.

It is a challenging task, but I’m trying to find peace with the girl I am today.  That girl in the photo didn’t know the treasure she had sitting right under her nose:  the people in her life.  Fancy clothes and extravagant things didn’t get me through cancer – my supporters did.  There is no greater gift than the relationships I have with my family, friends, and loved ones.  My life is very rich because of this, and it serves as the fuel that keeps me moving forward each day.

Having a little inner Katniss isn’t so bad either.

A great deal of time has passed since my previous post, which truth be told, really aggravates me.  I quietly set a personal goal to use this blog as an outlet for myself, and hopefully serve as a place for others to relate.  It was an attempt to help heal and move forward.  But life found a way to keep going on, pulling me in all sorts of directions, and I allowed it to keep me away from what my heart was telling me to do.  And in my case, when the heart and the brain trigger all sorts of conflicting emotions, tears form, and then nothing gets done.  Let’s blame the hormone meds, they’re my favorite scapegoat right now.

So here I am, just shy of a year beyond completion of treatment, and desperately grasping for positive measures to “move on.”    When I was going through treatment, I naively thought, “I just can’t wait for it all to be over.”  Fast forward one year and the harsh reality has set in.  It’s not over.  I’m not sure that it will ever be over.  Cancer has left it’s mark, physically and emotionally, and it is a continuous daily challenge.  Every.  Single.  Day.

In an effort to recap the past few months, I reviewed my last post and couldn’t help but slightly chuckle at my naiveté even then.  My bra woes continue.  And I’m going to go out on a limb and assume that most breast cancer survivors experience a lot of bra difficulties following treatment, no matter what form of treatment they underwent.  The effects of breast cancer just keep rolling in.

After several post treatment follow ups with the doctors, the need arose for me to be referred to a lymphedema specialist.  My visit with the lymphedema specialist revealed that I now have lymphedema of the breast.  Yay, more complications.  It explained some of the pain I’d been experiencing, but somehow made me feel worse.  I wanted to have a little girl in pigtails moment, digging her heels into the ground with arms crossed over her chest and yell, “why can’t it just be over?”  Reality bites.

Lymphedema cannot be drained as it is fluid filled tissue that was described to me as being like a wet sponge.  Treatment for this (in my case) is prescribed in the form of compression garments.  Hmm, so now I must wear a compression bra.  I didn’t even know what this would look like or feel like, but it didn’t sound appealing.  And when I received it, I learned that I was right.  I developed a new found respect for women in the past who wore corsets as part of their daily attire.  It is highly binding and uncomfortable, difficult to hide under clothing, and completely unattractive.  There is nothing about this garment that feels good to me.  Women don’t desire to feel this way.  Even the model advertising the product can only muster a half forced smile while wearing it.

As if that weren’t enough, my specialist also informed me that since I had lymph nodes removed, I’m also at risk for lymphedema of the arm.  I’ve been fortunate to not experience this up to this point, but the risk remains for years to come.  I experience daily pain and numbness from that part of my surgery, so I believe it.  I was educated on certain tasks and activities that can aggravate this condition, so I must be cautious and take appropriate measures during them.  The prescribed treatment?  You got it, another compression garment.  This one is a compression sleeve and gauntlet.  The gauntlet is a separate piece that goes over the hand to prevent the fluid from pushing down into the hand while wearing the sleeve.  And thus I learned if I’m looking for a way to ease the discomfort provided by the compression bra, just throw on a compression sleeve and gauntlet and that discomfort will be suddenly redirected to the arm.  It’s not glamorous.

I did not have the most ideal insurance plan when these items were prescribed to me, so of course they were not covered.  Since I had to pay out of pocket, I did not want to be bound to another medical garment that made me feel old and homely.  I mean come on, so much of the past year has already done that to me.  Fortunately, there are companies who cater to women like me and make fun and colorful patterned sleeves.  I was surprised at the amazing variety available.  I settled on one that I found to be fun, yet calming to the eye.

I guess the sleeve wouldn’t feel so bad if I didn’t have joints or require movement of my arm.  But since I am blessed to have those things, I find myself constantly pulling and readjusting it.  It’s always bunching on me (as seen here in the wrist), which leaves deep red marks if I ignore it – a big no-no according to my therapist.  It’s a hassle.

So compression garments are now a part of my attire.  And honestly, wearing them makes me cranky.  It’s not normal to have constant pressure applied to these parts of your body.  The doctors have said to me, “learn your new normal.”  I know I have to adapt to this.  I don’t like it, but I’m going to keep trying.